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Fit Factor: Inspiring Fitness Stories to Get You Going in 2018

January 9, 2018

Below, we’ll introduce you to three such people: Trevor Dunn, a young man with von Willebrand Disease, Dawn Evans, an adult woman who is asymptomatic carrier of Hemophilia A, and Barry Haarde, an adult male with severe Hemophilia A.  All of them have discovered a form of physical activity that is enjoyable and adaptable to […]

HFA Research Presents at ASH 2017

December 21, 2017

HFA’s Research Team gave and received early an holiday gift this year: knowledge. We attended the 59th annual meeting of the American Society of Hematology (ASH) in Atlanta, Georgia, December 9-12. The unofficial song of the meeting was “Let it Snow” as that (along with the once standing Georgia Dome) is what was on the […]

Caregiver Heroes: Kelly

November 3, 2016

In honor of National Caregiver Month, we’ll be featuring “Caregiver Heroes” throughout the month of November. While all in the bleeding disorders community are heroes in their own special ways, these folks are being given a special shout-out for the ways they take care of their loved ones and themselves. Meet Kelly from Nevada, who […]

Dateline: Ask the CDC – What’s von Willebrand Disease?

October 19, 2016

Erik von Willebrand, a Finnish physician, noticed several young girls in one family shared symptoms of a bleeding disorder. The year was 1924, and von Willebrand recognized that the girls’ symptoms were different from those of someone with hemophilia, a disease mostly affecting males. He called this new disease pseudohemophilia, or false hemophilia, but others […]

Infusing Love: Aprendiendo a vivir con un nuevo diagnóstic

September 21, 2016

von Willebrand Disease… ¿Qué es eso? ¿Qué clase de enfermedad tienen mis hijas? ¿Es contagioso? ¿Qué le puede pasar? Esta y muchísimas preguntas más fueron las que nos hicimos el día en que la pediatra en Albany, Nueva York, diagnosticó nuestra hija menor, Juliemar, 8 años a este momento, con von Willebrand Disease (vWd), tipo […]

Dear Addy: Advocacy Presentation

September 19, 2016

Dear Addy, I have to do a presentation in front of my eighth grade class on a cause I care about. I’d like to focus on bleeding disorders because I have von Willebrand Disease (vWD), but there’s so much information and I don’t know where to start. Help! Signed, Anxious for an A   Dear […]

Dear Addy: Pharmacy Choice

February 5, 2016

Dear Addy, Last year, my friend with hemophilia started working for a specialty pharmacy. Since then, he’s been pressuring me to switch from my current pharmacy to his. Initially, he was polite and nice, taking me to lunch and then dinner to ask for my business. Each time, I told him I am content with […]

Dear Addy: Why Are Medical Alert IDs Important?

January 15, 2016

Dear Addy, Several parents that I’ve met at the HTC have recommended I should get my daughter a medical ID bracelet. Why is this so important? Are there resources available to help me get her one? Signed Inquiring About IDs Dear Inquiring, For patients with serious medical conditions like a bleeding disorder, it’s important that […]

FDA Approves First Recombinant von Willebrand Factor

December 8, 2015

The U.S. Food and Drug Administration today approved Vonvendi, von Willebrand factor (Recombinant), for use in adults 18 years of age and older who have von Willebrand disease (VWD). Vonvendi is the first FDA-approved recombinant von Willebrand factor, and is approved for the on-demand (as needed) treatment and control of bleeding episodes in adults diagnosed […]

vWD Recombinant Clotting Protein Shown To Be Effective

August 3, 2015

Note: This is an edited version of a release originally published in Blood, the Journal of the American Society of Hematology (ASH).  On August 3, 2015, the journal Blood published study data indicating that the first protein engineered to help control bleeding episodes in patients with severe von Willebrand disease (vWD) had been shown to be safe and effective, […]

Dear Addy: CHOICE

July 29, 2015

Dear Addy, I keep seeing all of these Facebook posts and Tweets about the CHOICE Project. What is it and why does it matter if I take part? Signed, Need-to-Know Dear Need-to-Know, Glad you asked. CHOICE (Community Having Opportunity to Influence Care Equity) is a project driven by HFA and supported by the Centers for […]

HFA Patient Fly-In: Through Our Interns’ Eyes

July 7, 2015

Earlier this summer, we introduced you to Adam and Matthew, our summer Policy Interns. These two have been busy all over DC, attending Congressional hearings, Executive briefings, and much more. Recently, they got to experience first-hand the planning and execution of our 2nd Annual Patient Fly-In. Below is their take on the week, and a bonus […]

Supreme Court Upholds ACA Subsidies

June 25, 2015

We’re pleased today to learn that the Supreme Court of the United States, in a 6-3 decision, upheld the subsidies provided under the Patient Protection and Affordable Care Act (ACA). These tax subsidies have allowed so many in our community to afford the care they need to treat their ‪bleeding disorders, and we are confident that these […]

Cycling 4,000 Miles for Hemophilia Awareness

June 19, 2015

Note: This story originally appeared on PRWeb. Barry Haarde is a participant in HFA’s annual Gears for Good ride from West Virginia to Washington, DC. Cyclist Barry Haarde is on a mission to raise awareness about hemophilia and encourage individuals to support needy hemophilic children through Save One Life, which supports more than 1,200 individuals with […]

HFA Champion Award Given to 4 Members of Congress

June 18, 2015

On June 17, 2015, we hosted our 2nd Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day to gain support for bill HR 1600, The Patients’ Access to Treatment Act in the US House and Senate, and other issues like the ability for third-party non-profits to help make payments on behalf of patients, and improving access to skilled […]

Dear Addy: Out-Of-Pocket Costs

June 15, 2015

Dear Addy, So I saw the question you recently answered about what counts towards a deductible. You didn’t talk about what counts towards out-of-pocket costs. Does every penny I spend on healthcare count towards my out-of-pocket costs limit? Signed,  Pocket Picky  Dear Picky, No, not every penny you spend on healthcare will count towards your annual […]

2015 Advocacy and Government Affairs Interns

June 4, 2015

Earlier this year, we opened applications for a ten week advocacy & government relations internship* for this summer. We are excited to introduce you to the two candidates that we selected! Adam and Matthew are part of the bleeding disorders community and have been chosen because of their leadership qualities and interest in the field of […]

Recognizing National Nurses Week

May 6, 2015

Nurses play a fundamental and vital role in the lives of patients living with a bleeding disorder. Day after day they help to manage and run our important Hemophilia Treatment Centers (HTCs), answers phone calls in the middle of the night, teach children how to self-infuse at summer camp, and give unconditional support and compassion […]

Dear Addy: Is It Safe To Get A Tattoo With Hemophilia?

April 20, 2015

  Dear Addy, I want to get a tattoo, but am worried that my hemophilia will complicate things. Is this safe? Signed, Un-Inked ________ Dear Un-Inked, This is a subject that you and your hematologist need to discuss. Here are some questions to ask your hematologist: Safety—Is it safe for someone with hemophilia to get […]

Dear Addy: 340B Programs

April 7, 2015

Dear Addy, The specialty pharmacy that I have to use through my insurer doesn’t carry my preferred brand of factor so I have to go through the prior authorization process to get my factor. My hemophilia treatment center (HTC) does not have a 340B program but I know of another HTC that does and they […]

Infusing Love: Not “Just a Mom”

April 1, 2015

The candidates for the HFA Board of Directors Executive Committee were asked to record a short video to share rather than a written resume this year. I thought it was a great idea until I realized that I had to do it too.  I totally dragged my feet for a few weeks until I reached […]

Dear Addy: COBRA and the ACA

February 23, 2015

Dear Addy: It used to be when you left or lost your job you could get COBRA coverage until you found a new job. What is happening to COBRA with ACA implementation? What happens now if I lose my job and need health insurance? Sincerely, Daniel, Hemophilia Patient ___________________________________ Dear Daniel, If you lose your […]

Living Fit With von Willebrand Disease

February 13, 2015

One of the most common bleeding disorders in women is von Willebrand Disease (vWD), which occurs in about 1% of the US population. Heavy bleeding is one of the most common problems women report to their doctors. It affects more than 10 million American women each year. This means that about one out of every […]

HFA Partnering With NORD For Rare Disease Day and Hemophilia Awareness Month

February 12, 2015

In a couple of weeks, the bleeding disorders community will be recognizing Rare Disease Day on February 28, Hemophilia Awareness Month during the entire month of March, and World Hemophilia Day on April 17. These important dates were created to help raise awareness about rare conditions like hemophilia and other bleeding disorders. This year, we are thrilled to partner with the National […]

Dear Addy: Medical Benefit vs. Pharmacy Benefit

February 9, 2015

Dear Addy: My factor is moving from the medical benefit to the pharmacy benefit in 2015 and I’m worried. What should I watch out for? From, Jermane, severe hemophilia B ______________________________________ Thanks for writing, Jermane. We are seeing many insurers around the country making this switch. In several instances, insurers are placing treatment products for […]

Dear Addy: Out-Of-Pocket Maximums

January 28, 2015

Dear Addy: I see that my out-of-pocket maximums have gone up this year to $6,600 for an individual and $13,200 for my family. How am I supposed to afford this? With one severe bleed, between hospital stay, medication, and follow-up visits, we could reach this limit within a single month. Sincerely, Sonya, Hemophilia A patient […]

Dear Addy: Specialty Pharmacy vs. PBM

January 12, 2015

Dear Addy, What is the difference between a Specialty Pharmacy and a Pharmacy Benefits Manager (PBM), and why should I care? Signed, John, young adult with mild hemophilia A ________________________________________________ Dear John, The Academy of Managed Care Pharmacy (AMCP) defines a specialty pharmacy as “…distinct from traditional pharmacies in coordinating many aspects of patient care […]

Dear Addy: New Year, New Goals

December 29, 2014

Dear Addy, My company is having a New Year’s Resolution exercise drive in 2015. I want to participate like everyone else, but with my hemophilia I have limitations and joining a gym is expensive. What can I do to get involved and exercise like everyone else?  Signed,  Ben, Adult Male with Hemophilia B   ________________________________________________ […]

Baxter Files For FDA Approval of Recombinant Treatment For von Willebrand Disease

December 22, 2014

Baxter International Inc. today announced that the company has submitted a biologics license application (BLA) to the United States (U.S.) Food and Drug Administration (FDA) for the approval of BAX111, the first highly-purified recombinant von Willebrand Factor (rVWF) in clinical development as a treatment for patients with von Willebrand disease, the most common type of […]

Dear Addy: Holiday Travel

December 15, 2014

  Dear Addy, “My family and I are traveling out of state for the holidays. It is our first time traveling away from our hemophilia treatment center. Because of my son’s bleeding disorder we are concerned about insurance covering any emergency medical care he may need at an out of state hospital. How can I […]


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